Introductions: Season 1 Co-hosts

Join Molly Martzke along with this season's co-hosts Sarita Edwards, Linda Starnes, and Marisol Rose as they introduce themselves. Learn about them and what has brought them to this work, as they explain what it means to them be a family leader in systems change.

Transcript

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Welcome to Linked Together, a Family Center program. My name is Molly Martzke. I'm a senior program manager at Expecting Health. My journey as a family leader has allowed me to meet so many incredible parents of children with special health care needs and those professionals that work in the field. This program has been designed to share some of our successes, as well as some of the struggles and to shine a light on the advocacy community. We'll be delving into honest and transparent discussions. We'll dig into the issues that affect family leaders, including mental health, family dynamics, and the family leadership journey. We'll examine those issues from multiple angles to better understand what it means to be family leaders and driving systemic change. Expect deep dives into everything from how the statement I could never do what you do connotates choice to those complicated social, cultural and family dynamics of parenting a child with special health care needs, to that joy and love we found on this unexpected journey. I'm so excited to have you along as we share our stories. Welcome. Thank you for joining us. I'm here with three other friends and we're going to be talking about conversations that are close to our hearts. About raising our kids, that have special health care needs and all the kinds of issues that go around with that. So thank you for joining us. I am going to tell you a little bit about myself, and then I'm going to introduce each of them and we can get this started. So my name is Molly Martzke and I am from Wisconsin. My husband, Paul, and I we have three kids who are young adults now, and our oldest and our youngest are deaf. They were born that way. And that's kind of what brought me into this work. So, again, I can't wait to share my story and more of it with you. But welcome, Sarita, why don't you tell us a little bit about yourself. Thank you so much, Molly. I am Sarita Edwards. My husband, Kareem and I, we have five children. Jeffrey, Ryan, Josiah, Jeremiah, and Elijah. Elijah, our fifth child, was diagnosed in utero with a rare disease called Edwards Syndrome, or commonly known as Trisomy 18. And we were told that he would pass away in utero, during delivery, or shortly after birth. And that really started my efforts of advocacy and public policy. So thank you so much for having me. Yeah, awesome. Hey, Linda. Hey, welcome. And I'm glad you could join us. So why don't you tell us a little bit about yourself and your journey? Well, so I'm Linda Starnes, and I live in the Orlando suburbs down in Florida, and I am the most seasoned of the women that are here today because both of my children are well into their twenties. And as it just so happens, both of my children have very rare genetic conditions that are very different from one another. And so because they're adults, I've been allowed to disclose. They've given me permission to disclose and let talk about them a little bit. But my oldest daughter, who is 29, has Sotos syndrome, and she's also autistic And then our son Mac is 26, and he has something called Congenital Bilateral Perislyvian Syndrome. It's big mouthful And that has come along with a lot of medical complexity for him, most especially. And they have varying abilities and capacities Wonderful young adults and living mainly their own lives at this point. Oh, great. Marisol, welcome! Thank you Molly, my name is Marisol Rose. I live in Florida with my husband, and we have two children. My son is ten and my daughter is five. And my son is who actually introduced us to the world of disabilities. He was born premature. And along the way, he's had a number of different conditions and diagnoses. And he does have autism. He's twice exceptional and ADHD. He has a number of different acronyms and letters behind his name. So I call him my alphabet soup. And then my daughter is five, and she has Down syndrome. And they both are very active and keep me extremely busy. I'm sure. Yeah. So. Well, thank you, guys. I really am excited to share stories and learn more from all of you. But why don't you tell us all a little bit about, you know, how what you're doing now, like how we kind of heard about why you're into this work. But tell us a little bit more about what what you have going on right now. So right now for me, my professional background is health care administration and patient access. I've worked in health care for probably 22 years maybe. And then we found out that we were pregnant with Elijah because of the complexities of prenatal care and what we were expecting to to live with on the journey. We decided that I would leave my professional career and just be fully dedicated to Elijah. And so we did that and two years into that life, we saw a need to just bridge the gap between receiving our rare diagnosis and trying to coordinate care. And so we decided to start a foundation the E.WE foundation. And today I serve as CEO and President. E.WE is Elijah's initials, Elijah Wayne Edwards. And so the whole purpose initially was to offer bereavement support, because with our diagnosis, there's a high mortality rate. There is no treatment or cure for our disease. And and you're you're pretty much prepared for the child to pass away. And so the initial goal was to to offer bereavement support, while Elijah continued to live. And every time we reach a new milestone, we create something to help other families. And so so now we offer three programs just across the board. We've really stretched past just bereavement support. And and now we offer educational programing and comfort care and end of life solution. So we've just really expanded and I'm just really grateful to be in the space. So that's that's what I do every day. In addition to taking care of Elijah, he does go to school throughout the day for a few hours. So that's when I actually work as the CEO. So so that's, that's my day to day. So most of my life, I was at home with my two children. Just the requirements of all that came with having two very different kids that were covering 15 different subspecialty and therapy areas throughout their childhood. It was just really hard to work. So but work I did at home and then that's because my son has lived life with a trache and a feeding tube and he uses assistive technology for communication and he's a ventilator graduate. And so he was on a ventilator for several years and then stepped down CPAP and so on. So we have a NICU nursery at our house. So now that they're grown up and, and my daughter is fully on her own, she's married and, and living in Southern California, but our son is still home with us. And so that afforded me the ability to go back to work. So it just so happens that I work for the state of Florida, their Department of Health, and they have the Title Five program for children and youth with special health care needs. And I'm the statewide family leader for that program. But I do want to say I'm here as a parent and that's the whole reason that I'm here. So I just kind of sharing on that journey and not speaking for the state of Florida in this regard. I'm speaking for the Starnes family. Yeah. I was not prepared to be an advocate. I actually studied art history in college, and I went into banking afterwards. I took a little bit of time off and had my son, and he was actually the one who introduced me to the world of disabilities and advocacy what that all meant. So he was in the early intervention program, and it was when he graduated at age three that my therapist at the time, his therapist had told me about a position that was open at the local early intervention office as a family resource specialist, which is essentially a family representative. So I jumped on it and after about a year in the program, I found out I was pregnant with my daughter and she had Down syndrome. So since then I was I worked at the local office for about six years and I have been at the state office now for about a year. My title there is a state parent consultant. And like Lynda, I am here today strictly as a parent and representing families and in that perspective. But I do enjoy working for the Department of Health. I am actually on the board of our local Down syndrome organization and I've been on for about six years now. So before my daughter was even born, I started to become involved with them and and meeting other families. And that gave us so much hope and understanding. So I feel like I need to contribute back to all of that they've done for us in our family, and that is Manastoa BUDS. I'm very proud to be part of that local Down syndrome organization. Yeah, those local community organizations do provide a lot of support and stuff like that. So, yeah, and I. I get the pleasure of being the senior program manager at Expecting Health, where I get the privilege of working on the National Genetics, Education and Family Support Program, which is a federally funded program that really is looking at developing leadership, family leadership within the genetics network and the genetics field and stuff like that. And I get to do great things like have conversations like this, and I love that. But my journey has been long. It's been one of I feel a lot of parent leaders, family leaders that you kind of take pieces here and there. I a lot of volunteer work, some paid work, sat on some boards, did local stuff, did state level stuff. So yeah, I feel like it hasn't been a straight line. It certainly wasn't that accounting degree that I had. Right? I thought I was going to do when I did that in college. But it's been great. I feel like, honestly, that this is where I was meant to be. And I have so much fulfillment from doing this and having conversations with folks like you and all over and and helping support that family leaders and those family connections so that we can change those systems and leave this place a better place than when we came through it. So I look forward to all of that and more conversations with us. And I'm so excited for this The great conversations that we had today is supported by the Health Resources and Services Administration of the US Department of Health and Human Services as part of the work of the National Genetics, Education and Family Support Program, the contents or those of the participants and do not necessarily represent the official views of nor an endorsement by HRSA, HHS, or the US government.